Constantly exhausted despite 10+ years on levo - Thyroid UK

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Constantly exhausted despite 10+ years on levo

j5lt profile image
j5lt
5 Replies

Hi I've recently found this forum and excellent advice given here and wonder if I could ask for some help directly. A recent dental visit left me shaking uncontrollably and haven't been well since, 3 weeks now. He gave me adrenaline dental injection. I've been on levo 10+ years now with little improvement in energy. Very tired nowadays just work and sleep but even that difficult. I also have vitiligo on hands and feet. Huge list of other symptoms including weight gain, swollen tongue, brittle nails, dry skin, severe headaches, joint pain, etc.

GP only tests TSH and T4 (I didn't know there were other tests until I found this site). Levo dose often changed over years but mostly on 150mg

Two most recent test results are:

Oct 13

TSH 7.8 (range 0.3-5)

Free T4 17.1 (range 8.8-18.8)

Was at this level for quite a long time as gp said it was my body working to produce throxine (?)

July 14

TSH 1.64 (range 0.3-5)

Free T4 15.8 (range 8.8-18.8)

I'm now fortunate to have company bupa cover so thinking I should have other tests particularly adrenal testing.

Would really welcome your thoughts. Many thanks. J

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shaws profile image
shawsAdministrator

First thing - dental anaesthetic. You must ask for a non-adrenaline one. I was like you, so ill after injection I couldn't understand it. One dentist told me he had a solution (lies) and his nurse said she had never seen a carotid artery pumping like mine. I thought surely I was going to have a heart attack. Another dentist told me it was all in my mind. Both only used an ordinary injection, I believe, and dentist 2 probably thought the same as dentist 1.

I only found out a long time afterwards that it was the injection and advised to only take Citanest-Octapressin (and to remember the name) and my heart/body doesn't react at all. Every time now just before injection, I check that it is certainly this one.

Unfortunately, levothyroxine doesn't suit everyone but there are alternatives, sometimes the addition of some T3 (liothyronine) to a reduced levo works. If you email louise.warvill@thyroiduk.org and ask for a list of sympathetic doctors. Sometimes it is worth a journey. There are also natural dessicated thyroid hormones and there are several although they are more expensive than levothyroxine but they contain all of the hormones our healthy thyroid gland would produce, T4, T3, T2, T1 and calcitonin. Some people do well on liothyronine alone (T3) which is the active hormone each of our cells require for us to function normally. Sometimes levo doesn't convert enough for us to feel well.

If you haven't had a blood test for Vitamin B12, Vitamin D, iron, ferritin and folate ask for these to be done as we are usually deficient, iron, etc help convert levo.

You can feel much better.

shaws profile image
shawsAdministrator

Also, when you get thyroid gland blood tests, always have the earliest appointment and don't take your medication until afterwards. If you take levo at bedtime, miss this dose and take after test. Take any supplements, medication 4 hours apart from levo.

j5lt profile image
j5lt in reply toshaws

Thank you so much I'm really grateful for your response. I might try own gp first to try and get tests done first. Knowledge like this is so helpful stops me feeling I'm mad! Jx

shaws profile image
shawsAdministrator in reply toj5lt

You can also email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's Pulse Online article and question 6 details where our TSH should roughly be, or even suppressed. You can leave the article with your GP who then may first increase your dose and you can ask then ask if he will prescribe 10mcg of T3 as Dr Toft suggests.

Your GP should do the blood tests suggested.

j5lt profile image
j5lt

Thanks

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